1st May, 2002
Shelley Peterman Schwarz
IT SEEMS THAT NOT a week goes by that I don't hear about someone being diagnosed with MS. It might be a neighbor's nephew, a friend's secretary, or the mail carrier's daughter. This week it was a friend's daughter-inlaw, who is my daughter's age-27.
After the shock and sadness of hearing of yet another MS diagnosis, I picked up the phone to call my friend. As the phone rang, I prayed I would say the right thing and that my words would be compassionate, empathetic, and ultimately hopeful.
After the typical pleasantries, I told my friend that I had heard about her daughter-inlaw's diagnosis and wanted to offer a listening ear. Knowing that I have lived with MS for 22 years, my friend poured out her heart, detailing the events that led up to the diagnosis and how everyone, especially her son, felt out of control because they couldn't fix the problem and make it go away.
As I listened, I wondered what I could say to help them gain back some of the control they felt they had lost. Was there something I could say that would allay the fears everyone had about the future? Could I fan the spark of hope we all have that tomorrow will bring an end to the MS nightmare?
We talked for nearly an hour and I hoped our conversation proved helpful. Afterward, I realized that I've had this conversation many times with neighbors, friends, and family members who knew someone who had just been -diagnosed with MS. The reason this conversation hit me so hard this time was because this young woman could have been my daughter.
People often tell me that my words make them feel better and I now want to share these words with you. Perhaps they will help you when a friend or family member of someone newly diagnosed with MS calls you.
The first thing I tell people is to learn all they can about the illness. When they do that, they send a powerful message of love and acceptance to their friend or family member. I suggest that they contact the National Multiple Sclerosis Society for current literature and get on their mailing list. Their newly diagnosed loved one may not have the emotional strength to ferret out information in the weeks and months after the diagnosis. I also suggest the following: Surf the Internet for information about MS, visit the "ABC" drug Web sites, find out about the closest MS research center, ask for recommendations for neurologists specializing in MS in the community, or join a chat room and ask questions of others who are trying to understand this mysterious disease. I tell people they will begin to understand that MS affects everyone differently and no two cases are alike.
I tell people, "Your newly diagnosed friend may not be ready to process all the information you've learned, so be patient as he or she struggles to face their new reality." When he or she is ready to ask questions or your opinion, you'll be prepared and ready to respond.
"Although well intentioned, you may become hyper-vigilant and worried about your newly diagnosed friend's welfare. However, squelch your tendency to hover or control your friend's behavior. The person with the MS may misinterpret innocuous suggestions like, `Why don't you turn on the air conditioning so you don't get overheated?' as invasive and bossy. Remember, everyone with MS has to learn his or her limits-often through trial and error."
This leads me to something I experienced after my diagnosis. My parents lived 90 miles away from my husband and I. Once a month they'd drive up and spend the weekend. From visit to visit, the steady decline in my physical abilities was painfully obvious. As I struggled to put on a happy face, I could see the anguish in my father's eyes as he fought back the tears.
Finally, I got up the courage to say the words I needed to say. "Dad, I can't stand to see you cry whenever you look at me. Cry on your way here and on your way home, but please don't cry in front of me. This is hard enough without seeing how painful this is for you."
The last thing I tell people is that, in the 22 years since I was diagnosed,
medical science has made incredible strides in discovering treatments for
MS. Today is a most hopeful time for people with MS. With new treatments
and ongoing research, people who are newly diagnosed have a future that
includes having children, a family, and dreams just like anyone else. When
you add in the love and support of your family and friends, all things
are still possible!
© 2002, Real Living with Multiple Sclerosis